The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

matilda I get that too, I would love to blame the drugs, but I suspect it's lack of sleep for years I would definitely keep an eye on the indigestion/gastric pain. I think it is possible to get stomach problems even with coated NSAIDS and acid reducing meds, but takes a long time. If it continues for more than a couple of days, take a break and see if it eases? i would say talk to GP, but, then they will just stop it! What is your poo like? is it very dark?

No, I don't think so but will inspect! Oh what fun. Could just be the rather delicious Greek salad I made for lunch with a friend today. Pity, it was bloody tasty.

Oh I love greek salad. My MIL was married to a Greek man once upon a time (before when she met DHs dad), she can make amazing greek salad, and spanakopita (sp), and pasta flora, and my absolute favourite Baklava! She sends some over most years but stopped this last year as it takes her too long now. Now, they will give you indigestion

Hellooooo can't keep up, internet is still hopeless after all the wet, so I will just wave and hope this sends! Although Pavlov try Flexiseq for DH's knee and YY to why would anyone want to take these bloody meds for fun, I lie face down in the dogs bean bag every morning whilst the tramadol fights the caffeine and it is Not Nice although the sedation I will happily do again.

torn menisci, that's the ting I was saying about to DH. He thinks there has been a weakness, as he had knee pain last year, nothing significant, but he says the pain is one that he vaguely recognises. I have looked after him, he has his knee raised, ice pack on, meds taken, strict instructions to look after himself. He is refusing to consider not working tomorrow, he said he will strap it up, but he lifts heavy pots and pans, and works on his own tomorrow, and he can't put weight on it. Such a martyr!

oh I shall go take a look at that, thank you losty and come back properly soon!

I love the idea of lounging facedown on a beanbag for a while in the morning

oh will that Flexiseq work on spines I wonder? I might buy some for DH, but try it myself

I had a look at it too Pavlov looks interesting. Would be worth a try as it contains no drugs and can be safely used along side other drugs.

That's what I thought live worth a go!

I have another positive. I am not working tomorrow!!! yey !

Yay to not working! I am going to mention that flexiseq to my granny.

my dad swears by flexiseq for his sore hands.he keeps recommending it to me but I would have to bathe in it and buy it in vats

Hiya again, lol to al the drugs slang- it was me that suggested Amy but later realised it is spelt "Ami..." so not the best fit.

Your poor dh pavlov, I broke my anterior cruciate ligament when i was 14 ( practically impossible, you know, why thankyou) so I know knees can be terribly ouchy. Bag of peas is the best thing for icing coz it can mould around the whole joint. Really important to stay active as soon as you can as some people still advocate just rest, elevation and ice and then swelling can settle in and make it really stiff. What you say about kids is so true- they have a way to lift your spirits like no drug can. When I am stressed I lie on the floor (dont try this at home obvs) and cry "get mummy" which is their cue to come and lie on me, bliss. My little girl wants to picked up all the time- it kills me to say no, but i regret it later. Lots of hugging sitting on the sofa.And deffo second the idea that you dont have to be cheerful- sometimes you gotta vent. But like the idea of a cheery part to every post- balance.

Hello to cowmop , wishing you well .

matilda (hope i have remembered right) your pension thing sounds like they are trying to cover their arse, wankers.

peeps on the Amy and Nortryp, how long has it been because I found once I had adjusted to the side effects I felt way better. I started on a 10g dose and titrated up to 50g over about 2-3 weeks, after every up I had a day or two where I was a hopeless fog-brain all morning but now i am pretty ok. It might just be that i am quite fluff-brained anyway- great retention in class at uni but cannot remember where i've left my house keys- that kind of brain. So I may not notice an increase since i am like that anyway. I have had gastroenteritis last week and couldnt stomach any meds for a few days except the amy. Now I am finding today the effects are inconsitent because of that gap maybe. I had a stupor-type sleep after some at lunch and it wasn't an amount that would do that usually.What is this Pregablin stuff- sounds like a dwarf name from "Lord of the Rings".

some news anyway- had a call from hospital, cancellation so I am having my hip arthroscopy on 28th Feb eek! bit nervous but more happy to get on with it. Feel a bit sorry to say this when some of you have been going through such hellishnous for a really long time. No idea how long until I should expect to be pain free- and more pain first but of a diff sort i guess- ykwim. I will just take it one step at a time. At least this way i dont have a long buildup to worry over it.

sorry i'm rambling a bit. oh yes me and my dh used to watch Ren and Stimpy religiously pavlov. I know you are all obsessed with cake- pancakes too? pancake day is soon so i am going to try making spellt ones coz i am avoiding wheat as it gives me bad bloating and abdo pain if I eat too much. I am generally on the hunt for wheat-free cakes etc. Cafe Nero do a yummy carrot cake with rye flour that i fancy backwards-engineering. Costa coffee do several bits, the best is a choc brownie with gr almonds instead of flour, it is delish Hope at the time of this message you are all comfy and getting some shuteye and sweet dreams

Maizie it's great that they've squeezed you in for your arthroscopy. Being a bit thick, is it an in and out job or will you be in hospital for a while? It sounds like either way you'll be out of action for a bit, but will hopefully be worth it.

As I said way back when, I went back to the docs and she said she'd refer me on again. Bugger me backwards, a letter came the very next day from choose and book. I got the choice of one hospital and one date and one time, but I don't care, I will be there regardless! Roll on April 25th. It's for the Back Pain Clinic in the department of Rheumatology. To be honest with all the drugs I'm just about getting by most of the time, but am aware that the drugs are increasing and the pain isn't really decreasing and has changed, so hopefully someone there will actually listen rather than get me to bend backwards or try and touch my toes.

I'm sorry your in more pain again Pavlov and hope you're not over doing it with your new friend Goodness! How's the leg today Live?

hiya all walking now without sticks somedays better than others ,I still have numbness in my legs bum and lady bits I have numb toes too I had my op in march so 18m wont be up till sept .had a private medical and they think would be two years b4 im fully recovers ,but im prob gonna be left with permenant nerve damage :( I also have a ds with sn .

Hi girlies
Not able to read so doing selfish dumping thing. Headache and feel sick. Dropped from oxycodone (Roxy? Lol) 15mc/g to 10, now to 5 - over a week.
Tiiiiiiiiyaaaaaaaad. Asked DH to the me to local shops to choose birthday pressie for a friend.
Ssssssoooooooo tired

ilove well done on the no sticks! sorry to hear that there is likely going to be some permanent nerve damage do you have nerve pain? Is that manageable with meds? Do you have a proper treatment/future care plan to manage things?

TWO Positives! 1. I got a letter for physio appt. Not an appt, but a letter saying I have been referred and they need to arrange an appt date. WTAF? Is this for hydrotherapy? AFAIK I have not had a referral for physio. I actually bloody need it so not complaining, but totally confused now. If it's for hydrotherapy, that's bloody shit, as this is to arrange 'an assessment and if needed, a treatment plan' so that would mean at least another month before hydrotherapy! How can it be beneficial if I don't receive the treatment until 3 months after it's decided I need it? Anyway, I am not turning it down, no way! But it doesn't answer what's going on.

1. I went to Pennywell Farm. I am now absolutely fucked. Worth it, but literally standing still then moving an inch about an hour ago sent my back into spasm and it locked! It already did it in the supermarket, but luckily only for a few seconds, this time, I couldn't move forward, or backward! DH had to help me to the stairs, which was actually quite funny, as he can't bear too much weight on his own leg! I crawled slowly up the stairs and am now in bed, laying almost flat. I used my stick at the Farm, and such a good job too else I am not sure I could have done it at all.

Unfortunately, the red wristband currently on my wrist is not a festival one, but a re-entry to the Farm one DH has said in no uncertain terms we cannot go to Beautiful Days Festi this year I have tried to convince him said I would take an entire week off work following it to recover. He has said it's stupid to even think about it. I am tempted to just go buy the tickets I mean, we do only live once right? And this is what we used to do pre-children, and we had said we would do it last year onwards as children at an age we feel happy taking them, so, it's not like I want to do something we never did before, I want to carry on with the life we planned, to some extent at least. Am I being unrealistic?

Luckily, DH's knee is much better, he still can't put lots of weight on it, it catches him from time to time and gives way due to pain, but he can walk gingerly on it now. He said it is significantly better than yesterday, but clearly still not right, although hopefully nothing more than a twisted something or other and is on the road to recovery.

Good news maizie on the op date, that's quick! and also cowmop not so quick though!

cowmop I get what you mean about someone actually listening, rather than getting you to jump through their tickbox hoops. But, I am losing faith that anyone medical listens more than their targets require them to. I am sure they are lovely people who DO care, but their workloads mean they are just too busy, not their fault necessarily, but neither it is ours. I hope you get some positive experience from it.

maizie and do not ever feel guilty for getting a quicker appt than expected! That's a bonus, as we take them whenever we can on here, and are ultra pleased for others when it happens. So yey ! not boo! It's great news.

Cowmop and Maizie that's brilliant news about appointments.

Denial that's what I say about the flexiseq! I've got two tubes of it but I was having a horrendous back pain few weeks (needed DH to get up from anywhere, yes that incluces the loo ) and I was too scared to put any on in case it got sucked in to the disc and made things even worse (that may be terrible science but I was hurting too much for proper thinking!) I must get back to putting it on my shoulders.

Glad you've had a good day Pavlov but it is SO awful that it comes at this price. I don't know about the festival I would be tempted to book because you are right, we have to live now not some magic date in the future when we might be mended. I did football training tonight in the bogging rain which I am paying for a bit now but it makes me smile like a loon when they are all running around with the balls and the other coach was brilliant about making sure I didn't have to do any bending over and picking up.

This week I have mostly discovered that the one thing that helps with pain is making sure I do lots of lying down, so it's not ideal, thank goodness I don't have any work at the moment but it is certainly lower in side effects than just taking the maximum dose of tramadol .

sprouts , I'm delighted to hear from you! So glad you are progressing. I have permanent nerve damage but I'm doing ok. I wish I didn't but I do and I'm ok. Sounds like it's been very hard for you. Hope you have good support in RL. How old is your son? Seems like quite a few on this thread have dc with sn. Not easy. Anyway, keep in touch or even post your angry negative feelings here, we all do it and somehow it helps.

goodness, I'm not at all surprised you're knackered. It sounds like you've really upped your activity this week. Time for a duvet day? Rest is important, too.

I'm beyond knackered and in Trammy (!) stupor after epic London trip. Visited son's uni and went to the Isabella Blow exhibition at Somerset House. It was fantastic. We stayed so long we got chucked out at 6pm! Train home grim. Now in my default position on the sofa and thinking I will pay for this tomorrow but I don't care.

Blimey, about 6 posts while I slowly typed mine! pavlov your pain sounds a wee bit like mine. At least it was caused by a fun day out. I'd say book the tickets. Firstly it gives you something to look foward to and secondly you know how best to manage things so they work. Is it camping? If so you check out all options on making it comfy etc. bloody hell, tell your DH I managed to get all the way to Singapore! Physio sounds as stupidly annoying as ATOS.

Glad for those who have appointments and progress. We are so grateful for crumbs of hope.

I need a drink.xx

matilda I would have loved to have gone to the Isabella Blow show! Glad you had a good time, hope you are able to rest a little this evening and don't suffer too badly from it. Have you recovered from your jetlag? Are you now fully grounded back here in wet UK?

Yup
If I'm taken out for 1-2 hours, the best day is a day I can barely leave my bed.
I've one lesson to teach at 4.30 (easy) and would like to have someone help me take photos of things to sell on Ebay. But may get as far as taking a few photos. Can't even get stuff in n out of garage. Feel bad to moan as please gd, things will get better.
Have to have another CT of my head with an iodine injection soon. Why? Wish they'd tell me. Where will they inject? Should b used to it all but I hate it. Feels like I've so many calls to make each day.

losty glad you had a good footy evening too, you are right that we have to be able to live a little, well done the other coach for helping, hope you also don't suffer for it.

In fact, a big Positive vibe to everyone doing Stuff - to encourage speedy recovery from it, as, lets face it, there is no-one here who can do Stuff without at the very least feeling disproportionately tired afterward that includes you Live as I know you suffer still after doing your usual activities despite protesting that you are a fraud